Navigating the ‘Chronic’
Some people would hide away. Some people would happily live denying what’s happening. Some people would keep it all inside.
Some people would rather talk about anything but this.
And what is “this” when its highlighted, bold, italicised and underlined?
A life with a chronic illness.
When I was first diagnosed with Crohn’s disease, I was told to not call it chronic. Why? Maybe because at that point, my health wasn’t too bad. I wasn’t fighting cancer or been involved in a horrific accident. But the longer I spent in hospital; not getting better, taking more and more medications, wondering when things were going to finally pick up or start to get better, the more I wondered why I wasn’t allowed to feel sad that this was it. I learnt quickly they weren’t even close to a cure to IBD. They still aren’t. Treatments are getting better and awareness and diagnosis is advancing every year. Saying “I have Crohn’s disease” now means something abit more than. People don’t recoil as much when I briefly explain it and most say “I know someone who has that (or UC)” which is helpful. It helps break down the barrier.
But it is a chronic illness. I will live with this for the rest of my life. That is scary. Made even more scary with my surgical options at the moment; they are permanent choices, permanent decisions. It’s a long time to live with an ileostomy and no colon. As hard it was to accept my disease and how much I have battled with my depression, it’s become easier to speak about it all – from my doctors to friends and everyone in between – I don’t feel like I need to hide.
But I do want to hide. When it gets tough and I want to run away, I realise how much I can’t. I can’t just leave my own body and have another one which doesn’t have any problems. I want that so much some days. A normal body. One which doesn’t get tired from taking a shower or making a meal or even going out for a walk. One which doesn’t need a sick day off from work or one that makes excuses about wanting to go out and be sociable.
Crohn’s has changed my life.
Why wouldn’t I want to share that?
Because it scares people.
Because it scares me.
Because I can’t even profess to be 100% happy about it.
Chronic or not, I feel different. Even if it was an accident and it was all gone now, I would still be changed. And Crohn’s disease keeps changing me. It keeps me emotional to my drug side effects. It keeps me on top of new treatments and researching. It keeps me reaching out to other IBD patients for comfort and support. It keeps me thinking about who I am and how I am perceived in the world. If people look at me and see my disease.
I write and I share my experiences because I would go insane if I had to keep this all inside of me. I am fearful of not being honest and being secretive. I don’t want anyone to ever think I neglected myself. From the truth of what’s happening. It’s not always definable as “good days” and “bad days”, there are alot of those “in between days” when I can catch up with my thoughts and I can finally reflect on how shitty this is and has gotten recently.
Plus, if something goes wrong, who is there to say that that shouldn’t have happened?
Anything I have had to deal with in the past couple of years, would be totally alien to many. Why not normalise what happens? Why not create a safe place for these things to be discussed and – in some cases – made light of, when they are too heavy? When all you need or want is some relief? To feel some empathy, to not feel so alone and isolated?
